Walking a Tightrope: Balancing Continuity for Long-Stay Patients and Wellness for Clinicians in an Ever-Evolving Landscape*

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The patient population of PICUs has evolved significantly over time, with decreasing mortality rates but increasing morbidity rates for patients (1,2). The number of children living with complex chronic conditions (CCCs) continues to increase, and with that come substantial healthcare needs. While these patients may remain a relatively small proportion of children in the United States, they are highly represented among hospitalized children, especially in the PICU, with one study demonstrating children with at least one CCC make up more than half of PICU admission nationwide (2). Children living with medical complexity and technology dependence often require prolonged and recurrent PICU hospitalizations, what has now been described as chronic critical illness (CCI) (3). Traditional PICU models are poorly equipped to care for children with CCI, who remain at high-risk for persistent multiple organ dysfunction, suffer from high functional morbidities, and higher rates of mortality resulting in prolonged critical care needs and resource utilization (1,4). With this changing landscape, efforts must be taken towards identifying and addressing the unique needs of children with CCI that we increasingly serve in the PICU. One area of focus that many have turned their attention to is the pitfalls of frequently rotating providers inherent to traditional PICU care models. Intensivists typically rotating every week or so, and critical care nurses changing every 12-hour shift, can create discontinuous care poorly suited to the needs of long-stay patients (LSPs), their families, and even the providers caring for them. Previous research has demonstrated the myriad of negative impacts this classic care model has on families and providers alike, including, but not limited to, communication deficits, inconsistent treatment plans, delayed medical decision-making, impaired patient-provider relationships, family dissatisfaction, provider moral distress, and loss of the “big picture” (4–10). One effort that has emerged to mitigate these issues in hopes of better serving the needs of LSPs is establishing the role of primary PICU providers. A primary intensivist can serve as an adjunct to the PICU team, filling the continuity gap in PICU care, with the potential benefits of consistent communication and advocacy for the patient’s and family’s goals of care and preferences and as an additional resource to the primary team. Similarly, the role of a primary nurse for LSPs and their families can provide continuity at the bedside, both in terms of medical management and longitudinal relationship rapport. While PICUs are increasingly adopting the role of primary providers, to date, little published data exists about utilization practices and perceptions of the role beyond single-center data (8,11). In this issue of Pediatric Critical Care Medicine, Williams et al (12) address this significant knowledge gap, reporting the results of a cross-sectional survey across academic PICUs nationwide. In the most comprehensive assessment of the prevalence, practices and perceptions of primary intensivists and nurses to date, providers shared illuminating details on the utilization, responsibilities, and opinions of the benefits and challenges of the primary PICU provider role. The authors surveyed U.S. PICUs with an established fellowship, with 67 physician respondents and 59 nurse respondents, respectively. Notably, a great strength of this work was the robust response rate of greater than 80%. Among the respondents, over 75% of institutions have some form of a primary PICU provider role, and more specifically 36% (n = 24) utilize primary intensivists and 51% (n = 30) utilize primary nurses. The most frequently reported criterion for assigning primary physicians or nurses was a prolonged length of stay (mode = 14 d), with medical complexity a distant second for both roles. Regarding purposes and responsibilities of the primary provider role, which has no standardized definition, the prevailing expectations were attending patient-related meetings and ensuring continuity of patient information among rotating providers. Many perceived benefits were reported, with the majority of responses indicating increased patient/family satisfaction and improved communication among the medical team. In terms of perceived disadvantages, the most striking issue reported was the stress felt by the primary provider and the role being “onerous” in terms of time and effort spent. Williams et al (12) work does have a few notable limitations. Perhaps most noteworthy, the authors only queried one intensivist and nurse at each participating institution. Furthermore, due to the novel nature of the study, the questionnaire was self-designed and therefore not validated. These limitations must be considered when interpreting the survey responses related to advantages and disadvantages of the primary provider role, which are insufficient to draw definitive conclusions on the aggregate perceptions of each participating PICU. Given this limitation, above all else, we found that the authors’ results left us with more questions than answers in terms of the implementation and utility of the primary PICU provider role. The work by Williams et al (12) has nicely shed light on potential priorities for future inquiry and interventions surrounding how we best serve the needs of LSPs. Notable to us, as reported by the authors, participation as a primary provider is currently voluntary at a vast majority (> 90%) of institutions. Respondents estimated the proportions of providers willing to serve as primary intensivists or nurses were only 50% and 40%, respectively. Furthermore, while not highlighted, but striking to us, in the supplemental data provided on institutions where primary practices have not been implemented, the majority reason in survey responses for both intensivists and nurses was “lack of interest.” It is plausible that those with special interests and/or additional training in children with complex conditions would more likely volunteer for this role (i.e., dual PICU/palliative providers like ourselves). Has the time come that we can no longer say as a PICU community that serving the distinct needs of this vulnerable group of patients is best borne by only those with “niche” interest? As previously established, the patients we care for in today’s PICU are shifting, in large part due to our own successes as a PICU community, with increased survivability yielding increased medical complexity and morbidity. LSPs and patients with CCI are becoming the norm. With this trend well-established and continuing to rise, it may be time to take a step forward as an ICU community in the comprehensive care we provide in order to be in step with the patients we serve. Is it still acceptable to say that the role of continuity provider is optional? Or as the types of patients we serve in the PICU evolve, should the tenets of our PICU provider job responsibilities and descriptions evolve along with them? No longer can serving these patients be viewed as the passion interest of the few, but a moral responsibility shared by all. Do we not owe it to this growing patient population as well as our colleagues to all step up to the plate? Furthermore, what are our institutions doing to support PICU providers in this growing need? Williams et al (12) reported only ~50% of patients meeting criteria receive a primary provider, something which warrants further targeted inquiry. As surmised by the authors, one could speculate that a lack of resources and provider burnout in an already challenging landscape may be to blame. Could this be because our institutions are not providing the necessary support for this adjunct role in addition to already growing clinical demands of PICU care? The institutions we work for as PICU providers also bear responsibility to adequately support LSPs and those who care for them. Considering the PICU healthcare workfo

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.